I have a love/hate relationship with medicine. Tiffanni takes six different medications every day, four times per day. A different combination to balance her mood, movement, cognition, and motor skills. We know what each of the pills do individually, but what happens when you combine this particular concoction? The body is a brilliant machine and on its average to best days, has the ability to regulate itself. Tiffanni’s body has a hard time doing just that, but it’s not completely unable. So, we cram pills into her hoping to balance its inadequacies, and then manage the side effects of the first pills that she took.
A few months after her diagnosis nearly six years ago, I went to see a therapist.
“I just don’t have strong feelings anymore,” I told her. “I used to get very excited about things, I would feel the giddiness of new exploits, excitement before a trip, I had more ‘night before Christmas’ moments. I suppose the good news is that I don’t feel really low either. The pendulum of my emotions barely swings at all. Like sitting on a swingset and allowing the wind to give a push.”
We talked once a month for several months when she told me that I was depressed. I managed my mood fairly well on my own, nevertheless, depressed. She asked me if I would like to see the “Doctor”.
“It’s probably time for you to sit with the psychiatrist if you’re comfortable with that.”
Pensive, I responded, “My understanding of depression and medicine is this: when we go through trauma or grief, our bodies respond for survival. My body believes that if I were to feel all of the feelings that come with what I’m going through, it would be overwhelming. So, it has shut itself down in order to survive and make it through each day. When it believes that I can handle the situation, it will correct itself.”
She agreed so I told her that I wanted my body to do what it does, to which she gave a final warning. “I’m not a pill pusher and I only want you to do what you feel comfortable with. While the body is brilliant, it also forms patterns and habits. If you wait too long to correct it, it will have formed a new normal of not producing the hormones at the level it is supposed to. This is when you have to take corrective measures.”
I left with a feeling of hope that my body was doing what it was supposed to do, but also a feeling of concern. I didn’t know how long I was supposed to wait until I did something- there was this arbitrary date floating around that felt like a point of no return. I wanted to feel again, but I didn’t want to feel everything. I wanted to be excited, and happy, and awe-inspired, and creative, and even sad- but I didn’t just want to be very sad. For a couple of years, I carried this weight of a muted life, a life in black and white watching people live in technicolor. Lumbering through Pleasantville desperately longing to see red.
For four years Tiffanni’s disease (have you ever noticed the word disease? Dis-ease. Something that destroys ease) was regulated by medicine. Her body never cooperated, but her mood and cognition saw little instability. She was bright, thoughtful, had a great memory, hopeful, and seemed to be optimistic. Outside of the challenges of her body, we lived a manageable life. But something happened last year. The medicine didn’t change, but everything else did. Everything.
Tiffanni began to have delusions, hallucinations, and fixations. There were people in our house trying to kidnap our kids. Beehives in the corner of the bedroom. Bugs crawling all over her. People were trying to hurt her. Others, plotting against her. And the fixations were undeterred, sometimes hysterical. She needed her nails done, hair cut, a mammogram, to go to Olive Garden- you name it and it was unceasing.
With that we began a new search for management. The current medicine didn’t match the symptoms anymore. And this wasn’t an easy fix. She has had one to two medicine changes every month for nearly a year. Nothing worked, nothing penetrated those OCD like preoccupations.
Sometime last year, I decided that enough was enough. I needed to feel again. My body had protected me long enough and had probably formed some habits that were keeping my emotions from cooperating. I went to see a doctor. Just a Family Practitioner, not a psychiatrist. I thought that he would make conservative changes that would ease me into feeling again. He prescribed some anti-depressant that I can’t remember. I used it consistently for two months when I determined that nothing changed. It wasn’t working for me.
I went back to see the doctor and he told me, “In your case, there is only one other medicine that I would feel comfortable prescribing. Your particular circumstances necessitate a very specific drug, so we’ll try this new one. If it doesn’t work, then I just believe that God has determined that this burden is for you to carry.”
Theology aside, that’s a lot of pressure. “If this little pill doesn’t work, you are doomed to haunt the doldrums forever.” Theology not-aside, I just flat out disagree with that characterization of God. Which reminds me of how often we create God into an image that is manageable, understandable, and controllable. But that’s another post.
I took the pill for several months. I never saw a change, a discernible difference in my energy, my mood, or my emotions. Either my body put up a stronger fight, the medicine didn’t work, or this is my burden to carry- surely there are other options…
Tiffanni’s body refused to respond to any of the medicine changes the doctor prescribed. I spoke with the nurse weekly, each time exasperated by the ineffectiveness of modern science. She would relay my descriptions back to the doctors who would readjust and tell me to check back in within 1-2 weeks. Every time, Tiffanni would have an initial good day, even two, and then back to chaos. We didn’t sleep, barely functioning, slogging through each day just to start over again.
It’s hard to describe the guilt of going to bed every night feeling like my kids were parentless that day. The balance between caretaking, parenting, working, and personally staying healthy was impossible. It’s like trying to keep four plates spinning that are in different counties- I couldn’t get to them all.
I could tell that I was emotionally exhausted because I would catch myself having imaginary conversations in the shower. Exploding into a heap of anger, berating someone or something with illogical indignation. That was a better alternative than actualizing those conversations. On my best days, I would levee the frustration long enough to complete my responsibilities only to hide the rest of the day. That is until the chaos began again.
Once a month I would say to the nurse, “Isn’t there something that can just sedate her, make her sleep or tired, just to get through the most difficult moments?” The truth is that I wanted a tranquilizer. I wanted a break, needed a break. The whole family did. We all knew what was happening and tried to keep it together. The kids would fight and argue with each other without the self-awareness to understand that what they were at odds over had nothing to do with what they were fighting about. And of course it wasn’t just the kids.
Finally, three weeks ago, the doctor obliged my request and prescribed more medicine than Tiffanni could handle. She was over-medicated. Nearly a year of lost memories. In an attempt to endure, my brain eschewed some basic functions and just survived. Sometimes survival is underrated.
For the last few weeks we have had no episodes of incoherence. Excitement is down, sleep is up. But Tiffanni is just there. A spot or two of life if you know what to look for and she squeezes out a smile with her eyes every once in awhile. She is permanently in a wheelchair and needs 24-hour care. But the kids are calm, fun, and acting like kids.
About a month ago I started feeling again. I think. Or maybe it was always there. A sense of time is a distant relative at this point. Tears and laughter came easy. It wasn’t an onslaught of dammed up emotions bombarding my brain. It was more an awareness of subtle moments. Instead of this moment sad and this moment glad, there were some gradation in events. A change in hue. It wasn’t just Red, yellow, and blue- I felt green, purple, and orange. I might have even caught a periwinkle. I sensed more than the binary of happiness and sadness- but longing, surprise, interest, loneliness, anger, and awe.
The problem is that the renewal of my emotions have coincided with the most weak and incoherent moment of this disease. It’s as if she has transferred her feelings to me. Loss and grief and pain and hopelessness and reality and lost time and loneliness and anger weigh a lot. I wake up some mornings before my consciousness awakens. Light and optimistic, only to be snatched back into reality. That’s an emotional whiplash.
There were things that I was cognitively aware of before, but now I feel them too. I have felt a lot lately and I’m not so sure that I want to right now. I suppose my body has this under control. There are positives and negatives to feeling and un-feeling and I don’t think there is a third way. You either feel or you don’t. I’ve lived a long time un-feeling and gotten used to it. I think that I’m ready to explore more of these emotions, avoiding none. Because I’m not sure that I can heal without experiencing them all, feeling the feels, headlong into all of my humanity. Or at least as much as I’m ready for this season. Welcome back pleasure and longing and loneliness and focus and bliss and worry and misery and peace and empathy and hope- it’s been awhile.
“I’ve seen fire and I’ve seen rain.
I’ve seen sunny days that I thought would never end.
I’ve seen lonely times when I could not find a friend,
But I always thought that I’d see you again.” – JT